insideKENT Magazine Issue 48 - March 2016 | Page 133

CHARITY abigail’s story 12-year-old Abigail Bolt, who is dependent on a wheelchair, still remembers being able to walk. “I wasn’t always in a wheelchair. I could waddle until I was about 7 or 8,” she recalls. Her mum, Mel, remembers the time her daughter, who has muscle and nerve wasting condition Spinal Muscular Atrophy (SMA) type 2, stopped being mobile. “We came back from a trip to Spain to see family. I had a sickness bug and Abbie caught it and within 24 hours she never knew who we were. Her blood sugar level had dropped to zero and her body was shutting down. When she came out of the hospital she was a bit weaker. We put her on her feet and she fell and at that point we realised she would never be on her feet again.” The family are supported by charity Demelza Hospice Care for Children and Abigail, known as Abbie, has been spending time at the facility in Sittingbourne since 2011. Mel explained their initial feelings about going to Demelza: “We knew about Demelza but we thought it was more about the hospice rather than the respite. We stayed for the weekend, and from that moment on Abbie was just like `this is my place’. We loved it from day one. Now Abbie goes to Demelza for weekends every few months as she ‘gets a bit bored with food shopping and her parents.’” Abbie adds: “When I am here on my own I feel more independent, I can go on and do my own thing. I like either the pool or the music room.” Abbie has very broken sleep so for parents Melisa and Craig, when Abbie is at Demelza it’s a chance to catch up on sleep or spend time with their son, Bradley, aged six. Mel says: “Abbie needs moving every 15-20 minutes overnight. She gets hot and she gets cold and if she’s unwell she has to have her bipap machine on overnight to help her breathe. When she’s at Demelza it’s very quiet at home because we’re so used to the calling and the shouting and we do miss her, but we know she’s having fun and she just loves it here. It’s an amazing place and we can’t ask for a better place for Abbie to feel comfortable in.” them: “She’s getting weaker and she knows she’s getting weaker. It’s nice she can come here and forget about things. Demelza has also been invaluable for the family after Abbie had two major operations, one to insert spinal rods and one to adjust her hips. Rather than long stays in hospital Abbie came to Demelza for a few weeks a s the nurses could change the dressings, sort out stitches and give medication. Abbie said, “I found it helped as I don’t like hospitals.” “It’s always at the back of my mind especially when there are lots of colds or coughs about, do we have to go to ICU, is she going to come out of ICU? The family have also benefitted from some of the extra care Demelza provides. Abbie has had art therapy sessions and Bradley is looking forward to taking part in some of the sibling activities. “As she does get weaker it’s nice to know whatever the outcome is she can come here and know that she’s going to be looked after.” www.demelza.org.uk And while the future for Abbie is uncertain Mel knows that Demelza will continue to be there for volunteers needed for maidstone charity shop Demelza Hospice Care for Children is holding a volunteer recruitment day in a bid to find more help for its charity shop in Maidstone. The shop sells a range of donated goods, clothing, homewares and accessories and also organises craft events and clubs. Staff will be at the shop in the Royal Star Arcade on 3rd March between 10.30am to 1pm with information for anyone interested in volunteering. The charity, which supports the families of children with life-limiting or lifethreatening conditions across Kent, originally opened a pop-up shop in the Royal Star Arcade for Christmas 2014. But the store proved so popular with shoppers that when another unit in the centre became available last year Demelza decided to open a permanent shop. More volunteers are needed to help run the shop with tasks including pricing, sorting, window displays and serving customers. Anyone who is unable to attend but is interested in volunteering can ring 01795 845265 or email [email protected]. 133